Monday, 24 August 2015

It's no exaggeration to say July was the 4 worst weeks of my life and I feel things have now changed forever. It started at the end of June when I started feeling a bit rough. I have been battling with oral candida for ages and I guess the constant swallowing of it was taking its toll. But more seriously it had probably been the cause of the chest infection that on 2nd July took me to the first of three hospital admissions. Around 11am I started having breathing difficulties because of mucus in my chest I couldn't cough up. Ambulance was called and when my oxygen saturation dropped to 80% I was taken to hospital in my car sandwiched between 2 ambulances with sirens on. Alarmingly I was taken to the resuscitation area where with the help of nebulisers and suction tubes into my lungs, I was finally able to get the mucus out. I was kept in overnight in a ward where it was impossible to sleep because of the constant noise. The next day was the day of the record breaking temperature. Although I had been moved to a side room it was over 40 degrees and after talking to the doctor, it was agreed I could go home. I am actually writing this almost 2 months later as this is the first time I have felt well enough to write about it, but this could take hours to write in full, so here are the bullet points. Had terrible night at home the next night Called doctor next day and after hours of arranging things, arranged admission to private hospital in Cheam. Xrays and blood tests confirmed pneumonia on both lungs Next 10 days spent in hospital, initially in intensive care On two occasions required lungs suctioned, a deeply unpleasant experience requiring a 10cm long, 1cm diameter tube to pushed up my nose completely and inserting another tube through it in the lungs. Our family cruise was just 3 weeks away and was I very doubtful about being ok or even still around to go. Kadvi, who was with me at the hospital, had holiday booked 3 days after I was due home but typically the agency had waited until the last minute to find a relief. Spent the last 5 days in hospital training a new carer while still feeling terrible. Was discharged mid July, but although I had recovered from the pneumonia, I still felt absolutely terrible. Next few nights at home slept badly, waking regularly, vivid dreams. All symptomatic of an insufficient respiratory system. With just 2 weeks until cruise I knew I needed to have ventilation overnight. I knew this would mean several nights at Kings College Hospital. This is a nightmare in itself but was compounded by having a new carer with just a week's experience. Overnight oxymetry confirm my oxygen saturation is dropping to as low as 80 every time I go into deeper sleep. Predictably horrible journey to hospital, so many things to take. I even need to take my standing hoist as hospitals don't have them. Spend two nights on ward with 4 others, 2 of who had advanced MND and regularly could be heard drowning on their saliva. Then the guy opposite's oximeter alarmed loudly every 10 minutes when his ventilator mask kept slipping out of position. The alarm didn't wake me up because I had already been disturbed by the whoopee cushion noise from the ill fitting mask. My stay did nothing to change my view that many of our "wonderful" nurses are far from wonderful. In fact I would describe many as incompetent, impatient and uncaring. I told one nurse that my scapula was out of place. To my amazement he had no idea what a scapula was. I was about to educate him with the help of google images but before I had a chance, he kicked the computer stand so I could no longer use the eyegaze. I had specifically told the nurses to be very careful not to move it. After 2 nights with no sleep, completely defeating the point of going to hospital to assess my sleeping oxygen saturation using ventilation, I was discharged There's so many other things I could write about my three hospital visits but I just want to consign it to history. With just a week until the cruise and still feeling awful most of time, I still had doubts about going. It was really only because I new the boys would be very upset if I didn't go, that I was still considering it. To be honest I was dreading it and viewed it as 2 weeks I just needed to survive. I had had pneumonia just 2 weeks earlier, breathing difficulties a week earlier and felt like death warmed up, so the thought of the ship departing from Southampton dock , sailing a few thousand miles away and needing to be Medivac'd off the ship by helicopter to some Spanish hospital was weighing heavily. And I know my carer, Kadvi also had concerns. But I went, felt considerably better by day 3 and had a lovely time. More about which next time. However, since the pneumonia there has been a stepped change. The obvious difference is I now need to use a ventilator overnight, and whilst it has not been as difficult to tolerate as I expected, it's still pretty depressing that I now require it. But the other less obvious change is, I just feel different now. The July experience didn't just illustrate how precariously fragile my health is, it also hit me for six both physically and mentally. Everything seems a little darker now, my enthusiasm for doing things or going out is diminished. Maybe in time it will improve. I hope so.

About Me

OK, should have done this two years ago when I was first diagnosed with Motor Neurone Disease but better late than never. I thought it would be a good way of keeping anyone who was interested up to date with what's going on with us. Communication is getting harder and whilst I want to keep texting, emailing and chatting to everybody this seemed a good way of saying more things to more people more easily. Typing is a slow process (this has taken 20 minutes so far) so a once to many approach seemed good.
I hope to keep it up to date with various stuff including whinges about things MND related as despite trying to "keep positive" it does affect (in a generally f**ks it up kinda way)almost everything I do!
For those of you who really want to, you can check out my "status" on my web link.
Finally, PLEASE leave comments, even if brief as its the only way I know its being read!!